When I started this writing journey in Florence, Italy, there were things I wanted to write and things I needed to write. This is the first of a series of posts that represent one topic from the latter list. They will deal with my perspective as a health communication scholar on end of life care, focused largely around my uncle’s death in 2013. This first post outlines how I came to this conversation personally and academically. I thought you should know from the outset, who I am in this conversation. For me, there has always been a strong relationship between the personal and the professional as you shall see. The following posts in this series will include academic critiques, personal narratives, and insights on how to negotiate end of life and advocate for self-determination and personal decision-making.
In 1986, when she was 15 years old, my youngest sister was diagnosed with Acute Lymphoblastic Leukemia. She is a survivor who today is happily married with 4 children. That said, much of my sister’s battle with leukemia illustrated for me what is wrong with the US health care system. I had just developed my participative decision-making model for physicians and patients which would ultimately be published in 1990 (1) and in an expanded version in 1993 (2) when my sister was diagnosed.
As an academic, my first response is always research. So, when I flew to Florida to meet with my sister’s oncologist for the first time following her diagnosis, I was ready with questions about alternative treatments, success rates, the role of nutrition in enhancing her ability to overcome the cancer, treatment side effects, and so on. My first question after my sister’s oncologist outlined what I thought were his treatment recommendations was “What other alternatives do we have?” He replied, “You could leave.” That stopped me short. After a long pause, I replied, “I’m sorry. I don’t think you understood me. I’m asking what other treatment options are available for this type of leukemia.” He repeated, “None that I recommend, so if you don’t want to do what I advise, you are free to seek treatment elsewhere.” I was stunned. So much for collaborative decision-making. It quickly became clear that for my parents, there would be no options, no alternative treatments considered. This doctor was “the best”; they were going to put my sister in his hands.
I spent as much time in Florida with my sister as I could, traveling back and forth from Reno as my teaching schedule allowed. I remember on one trip, my sister asked me to play in the swimming pool with her. I used to be a pretty good diver. Back flips were my specialty. After doing several of those and making her laugh, she asked me to do a front flip. I don’t know why, but front flips have always been more of a challenge for me. I tried repeatedly over what felt like hours to do a front flip, stinging the backs of my legs a bright red. That night after dinner, we were snuggling in her bed and I quipped, “Well, since I clearly can’t do a front flip, what else can I do for you sweetie?” She said “Write about us. You’re the writer in the family. Write our story.” So I did. I interviewed my parents and my sister and I wrote their story. I didn’t include my voice as I wanted to empower theirs. I was “in and out”. I wasn’t part of the day to day. That journey was theirs. I co-authored what became a book chapter with my sister on her story and that of my parents. (3) I also wrote a companion chapter on the disenfranchisement of families coping with adolescent cancer (4).
In late 2001, my father became ill with what was diagnosed as terminal cancer. He was given 6 months to live. He died on June 27, 2002. My family was together for the last 2 weeks of his life and I took on the responsibility of talking with him about his final wishes and making arrangements for him. While not easy conversations, I think he appreciated my willingness to have them, including planning his funeral. The only things he wanted were to be buried in the local cemetery. He’d asked that his lifelong friend Dick be a pallbearer, and he wanted me to sing the Simon and Garfunkel song, Bridge over Troubled Water. Given the circumstances, I told him I knew I wouldn’t be able to sing. I did agree to do the readings at his funeral Mass though, and I was able to work through the church to find a young woman with a lovely voice who agreed to sing. The song was sung, my father’s wishes honored.
During those last two weeks, hospice was also with us around the clock. They were a blessing. They explained the dying process, what we could expect, choices we had to make, like allowing my father to stop eating, pain medications, etc. The only place we strongly disagreed and I could not win was over pain medication. As his condition deteriorated, the pain medications wore off more and more quickly. I spent the last 3 days of his life, until the afternoon of the day he died, on the couch in the living room next to his hospital bed. I dozed there and woke to administer his pain medications every 2 hours. When he dozed, I dozed. When he was restless or awake, I was awake. We talked. We held hands. I brushed his hair. I was there for him. The problem came in that I was not permitted to dose him more frequently than every two hours. Some of those two hour periods were brutal. For me, there was absolutely no reason for my father to feel any pain. I believed his pain medication should be “as needed”. For the hospice workers, the fear that he “might become addicted” held greater weight.
Shortly after my father’s death, I coauthored an article with Joyce Letner about centering families in communication research about cancer, outlining specific premises and strategies to support families in coping with cancer management (5).
You probably see a pattern here. My personal life often informs my academic work in health communication, or vice versa. While many other projects and lines of research over the next 10 years impacted my preparation to support my uncle and advocate for his wishes as he went through the process of dying in the summer of 2013, I was not fully ready. For this experience acting as his advocate, I have learned a great deal about negotiating end of life and health care decision-making which may be useful to others. I will write about those in future entries.
One important thank you. I am indebted to my colleagues at the Nevada Center for Ethics and Health Policy, at its height, a cutting edge think tank where medical, communication, public health, and theological experts brought their insights to bear on promoting advanced planning and quality of life decision-making at end of life. Through their inspiring work over years, I embraced more fully the notions of self-determination in health decision-making, the critical role of communication in health care, and patient empowerment. These insights served me well on this journey. So, I thank the kind, gentle, Reverend Noel Tiano, director of the center, and my insightful, brilliant colleagues who taught me the importance of advocacy, Drs. Barbara Thornton, Greg Hayes, and Craig Klugman.
Bibliography of my relevant publications referenced in the above:
- Ballard-Reisch, D.S. (Spring, 1990). A model of participative decision making for physician-patient interaction. Health Communication. 2(2), 91-104.
- Ballard-Reisch, D.S. (1993). Health care providers and consumers: Making decisions together. In B. Thornton and G. Kreps (Eds.). Perspectives on Health Communication. (pp. 66-80). Prospect Heights, Ill: Waveland Press.
- Ballard-Reisch, D.S. & Price, J. (1996). Separation and oncology: Copying strategies of a family dealing with leukemia. In E. Berlin-Ray (Ed.). Case Studies in Communication and the Disenfranchised. (pp. 75-86). Hillsdale, N.J: Lawrence Erlbaum and Associates, Publishers.
- Ballard-Reisch, D.S. (1996). Coping with alienation, fear and isolation: The disenfranchisement of adolescents with cancer and their families. In E. Berlin-Ray (Ed.). Communication and the Disenfranchised. (pp. 185-208). Hillsdale, N.J: Lawrence Erlbaum and Associates, Publishers.
- Ballard-Reisch, D.S. & Letner, J.A. (May, 2003). Centering families in cancer communication research: Acknowledging the impact of support, culture and process on client/provider communication in cancer management. Patient Education and Counseling, 2074, 1-6.